{"id":47162,"date":"2022-09-26T15:11:38","date_gmt":"2022-09-26T19:11:38","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2022\/09\/26\/simons-searchlight-nahm-an-der-global-genes-conference-teil\/"},"modified":"2022-09-26T15:11:38","modified_gmt":"2022-09-26T19:11:38","slug":"simons-searchlight-nahm-an-der-global-genes-conference-teil","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/de\/2022\/09\/26\/simons-searchlight-nahm-an-der-global-genes-conference-teil\/","title":{"rendered":"Simons Searchlight nahm an der Global Genes Conference teil"},"content":{"rendered":"<p><span class=\"notranslate\">Simons Searchlight<\/span> nahm am RARE Patient Advocacy Summit 2022 teil, der von Global Genes in San Diego organisiert wurde. Bei dieser Veranstaltung werden die Geschichten aus der Gemeinschaft der seltenen Krankheiten vorgestellt. F\u00fcr <span class=\"notranslate\">Simons Searchlight<\/span> war es eine bedeutsame Erfahrung, mit der gro\u00dfen Gemeinschaft der Menschen mit seltenen Krankheiten in Kontakt zu treten &#8211; von Forschern, Pflegern und Anw\u00e4lten bis hin zu Experten aus der Industrie.<\/p>\n<p>Amanda Tufano und Jane Hong pr\u00e4sentierten ein Poster zum Thema &#8220;<strong>Addressing Social Determinants of Health in the Rare Genetic Community<\/strong>&#8220;, das sich mit den Gesundheitskosten, der Diskriminierung im Gesundheitswesen und dem Gemeinschaftsgef\u00fchl der Befragten der <span class=\"notranslate\">Simons Searchlight<\/span>-Kohorte befasste. Neben dem Thema der Konferenz, dass jede einzelne Geschichte \u00fcber eine seltene Krankheit wichtig ist, sollte das Poster auch die Stimmen innerhalb unserer Gemeinschaft beleuchten.<\/p>\n\n\t\t<style type=\"text\/css\">\n\t\t\t#gallery-1 {\n\t\t\t\tmargin: auto;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-item {\n\t\t\t\tfloat: left;\n\t\t\t\tmargin-top: 10px;\n\t\t\t\ttext-align: center;\n\t\t\t\twidth: 50%;\n\t\t\t}\n\t\t\t#gallery-1 img {\n\t\t\t\tborder: 2px solid #cfcfcf;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-caption {\n\t\t\t\tmargin-left: 0;\n\t\t\t}\n\t\t\t\/* see gallery_shortcode() in wp-includes\/media.php *\/\n\t\t<\/style>\n\t\t<div id='gallery-1' class='gallery galleryid-47162 gallery-columns-2 gallery-size-full'><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.simonssearchlight.org\/de\/2022\/09\/26\/simons-searchlight-nahm-an-der-global-genes-conference-teil\/image_50416897-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1920\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-scaled.jpg\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-scaled.jpg 2560w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-300x225.jpg 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-1024x768.jpg 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-768x576.jpg 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-1536x1152.jpg 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110633\/image_50416897-2048x1536.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.simonssearchlight.org\/de\/2022\/09\/26\/simons-searchlight-nahm-an-der-global-genes-conference-teil\/addressing-social-determinants-of-health-in-the-rare-genetic-community-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"4608\" height=\"3456\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community.png\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community.png 4608w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-300x225.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-1024x768.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-768x576.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-1536x1152.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/09\/26110626\/Addressing-Social-Determinants-of-Health-in-the-Rare-Genetic-Community-2048x1536.png 2048w\" sizes=\"(max-width: 4608px) 100vw, 4608px\" \/><\/a>\n\t\t\t<\/dt><\/dl><br style=\"clear: both\" \/>\n\t\t<\/div>\n\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Auf der Konferenz werden die Geschichten aus der Gemeinschaft der seltenen Krankheiten vorgestellt.<\/p>\n","protected":false},"author":18,"featured_media":47179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[331,326],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/posts\/47162"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/comments?post=47162"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/posts\/47162\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/media\/47179"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/media?parent=47162"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/categories?post=47162"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/de\/wp-json\/wp\/v2\/tags?post=47162"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}